Gavin came home on December 21st 2021.

It was our goal from day one. To get him back home. And thanks to our mum, she did it. 

It was made extremely difficult to get Gavin home but in the end after many assessments to clarify whether Gavin had capacity or not we were finally given the green light. 

We finally had him home and just in time for Christmas. It didn't come without challenges. Mums downstairs had been transformed into Gavs room, there were lots of adaptions and some tough days but ultimately everyone was so much happier having him home. The first night home, Mum, My Auntie and Myself sat for hours trying to figure out how to put Gavs feed on (he was fed overnight through a PEG) My mum was given two ten minute sessions on how to do this, which obviously is not a sufficient amount of time to learn something so vital, he was sent home without some of his medication among alot of other things. However we managed to do it, and although this wasn't the start we had hoped for , it didn't matter because Gav was finally home and this was his new start.

We were promised so much. We were told how Gav would have a physiotherapist, speech and language team, Occupational therapist, and so much more, we thought Gav would finally get the support he not only needed but so very much deserved, but unfortunately this wasn't the case. 

One memorable moment was when a physiotherapist finally came to see Gavin and gave him a ps4 controller and said "when he can hold that, call me and I'll come back out and see him" she was there no longer than 10 minutes. We never did see her again.  We were told he didn't warrant physiotherapy. Our opinion was the opposite, we felt that due to his lack of mobility he deserved to have regular stretches and massages to help with spasms and prevent bed sores etc

Gav would regularly spell out things on his letter board and even though he told several people he didn't want to use things like eye gaze to communicate he wanted to learn to talk, he was ignored or told he had to wait for a therapist to come and see him. 

Despite many let downs, Gavin was most of the time so happy. He would have a joke around and make us all laugh, and even though he couldn't communicate verbally, his facial expressions said it all. He loved to joke around all the time and constantly wound up mum and our step dad Brian. Despite the failings from authorities, Gav maintained his ability to understand and process information and reply using nodding gestures and facial expressions. How amazing is that! 

Gav loved being at home with family and made some wonderful memories. He was incredibly strong and brave and kept all of us strong along the way. 

We feel incredibly lucky that we got to have 19 months at home with him and will cherish that forever. 

If you are struggling to get support at home, contact your GP surgery, social worker and occupational therapist.

To note - any referrals for other services such as physio and speech and language need to be made via your GP. Ask for a copy of the referral for reference. 

We were told referrals had been made when in fact they had not. 

None of what we share is to point blame at anyone. This is our story and our experiences. We are sharing these things with others to raise awareness of the areas that need attention in order to make these experiences smoother for all those involved.